Short version: 1 year of not being diagnosed utter hell. Then found out thru Internet the possible diagnosis of PMR. Told doctor who gave me prednisone told me to take 15 mg but I took 20mg. The next day I was able to not only get out of bed without intense pain I was also able to raise my arms n comb my hair. I had no idea what prednisone was nor all its side effects. Then I was diagnosed with GCA and we went from 10 mg up to 50 for one month then 40 30 etc.
I am now Down to 7 mgs and have lots of pain and my fear is I will have to stay on this med for a lot longer than I was reading others say. I started Prednisone in April 2015.
Once I got a Rhuematologist she started me on all kinds of meds one of which for the last 6 months is methotrexate which I finally stopped and told her never again. It felt as if I was poisoned. My elevated alt of 37 went down to 25 in one month after stopping.
Now back to my title. I am supposed to go down to 6 mg this week. Yet my labs still show elevation in inflammation and my wbc continues to stay high for months. It is now 16.7 and I can hear myself wheezing when sitting still n doing nothing. No one knows where the infection is from wbc elevation.
Sorry about writing a book but I am feeling so sad thinking I will have to up the prednisone again. I have gained 40 lbs when on methotrexate it was awful.
Does anyone know what dose keeps us pain free?